Chance Encounter?

I remember vividly the day this man walked into my life. It was September 17, 2003 and I had just given birth to my son two days before. Over the course of that 24 hours, I began to realize that something was wrong with my new baby and that he wasn’t eating. He was starving, I could tell by the way he rooted for my breast and cried. For some reason, he wasn’t latching on. I knew I was about to be in trouble because my milk was beginning to come in and my breasts were swollen and painful. I tried relentlessly to get Justin to latch, but his tiny little mouth just wouldn’t form a seal. I cried and became anxious and begged the nurses to ask the doctor to find out what was wrong, afterall, I had never had any problems with my other two children latching on and I surely didn’t have any problems producing milk. In fact, I have often said I could’ve fed a third world nation with the amount I was producing. So, this was truly frustrating me and the baby and as much as I tried not to be upset so my milk wouldn’t be stressy, I couldn’t help but feel this fleeting sense of loss that I may never have the opportunity to nurse another child.

Through that first night and into the next day, the nurses also tried to bottle feed–something I had never done with my two girls and yet, whatever would help the little guy out and satiate his hunger was fine by me. I was also exhausted after a long natural childbirth and welcomed the break–something I had never allowed myself with the first two either. By the second morning, it was becoming clear that something wasn’t right. It just so happened that a particular physician was on call that morning on the OB floor and he was sent in to talk to me. I was holding Justin and trying to get him to suck on a tiny binky. I heard the door open up and as I looked up, I saw a very tall, distinguished, and kind looking man walk into the room. His dark suit made him look taller and I could tell with his handshake that he had the most gentle bedside manner and demeanor.

He proceeded to tell me that Justin was tongue tied. The little membrane that holds the tongue to the floor of your mouth so it won’t fall back in your throat was actually much longer than most babies. His was mounted to the back of his bottom gum line. It was preventing Justin from thrusting his tongue out to draw the nipple into his mouth. It was also preventing him from making the motion with his tongue that helped draw the milk out. Without a small surgery called a frenotomy. It was a fairly routine and ismple procedure where he would make a snip in the membrane and it would allow for improved tongue movement. This had several advantages–breastfeeding, eating as he got older, and most importantly, speech. Being tongue tied would impede the necessary movements the tongue needs to make in order to produce certain sounds.

Of course, I agreed, but felt sick to my stomach that within the first 48 hours of his birth, he had been circumcised (a procedure I watched and almost passed out in) and now this. There was something about this doctor, however, that put me at ease. He was quiet and soft spoken and empathetic to my worry about it hurting. He assured me it would not be bad and that I should immediately nurse my baby afterword. He promised it would do the trick. I believed in him and ya know what? He was right. Never had a problem after that and Justin was a hearty eater. He made up for lost time and spent the next week literally hanging off me. As the doctor left that day, he gave me his card. His name was like two first names and I told myself I would never forget it. I noticed he was a plastic surgeon. I remember thinking two things after thanking him and watching him leave, “Well, if anyone was going to be cutting on my baby, I’m glad it was a plastic surgeon because they will be meticulous about it.” The second thing I thought was, “hhhmmm, I should hang on to this card, never know when I might need that boob job”!

I said it jokingly, but secretly wondered if someday I would have the guts to really have one–afterall the affects of time, gravity and nursing three children had and would continue to prove my point that I was beginning to look like the poster child for National Geographic. Little did I know that my words–my very UN-SPECIFIC words would come back 5 1/2 years later to haunt me.

What do you think–chance encounter or a sign?

Circle of Friendship

In this past year, I have come to grow a new circle of friends. An international collection of women and some men that have followed my story and been an ever present support to me as I have battled with many demons. When I started this blog it was to mainly keep a few far off relatives in touch with my progress. As the weeks and months have passed, an army has marched into my life. Some of these soldiers that keep me motivated are friends from my childhood that I have reconnected with through Facebook. I’ve even been getting the hand of Twitter-something that has been driving me a little nuts all summer. Many of my new friends now mingle in with my old friends and it doesn’t matter who drops me a line, I am always happy to know that someone is thinking of me. Many of my old friends now read my new friend’s blogs as well. Technology sure has had a way of connecting everyone.

I have thoroughly enjoyed this network that has spread across the world. My hits have surpassed 10,000 –something I never expected. It’s like opening up a present every morning when I wake up. I check stats to see where hits are coming in from and I quickly check for messages. Love getting them, but don’t get as many as I would love. I check world locator and find that people in Russia, New Zealand, Australia, Hong Kong, Japan, Europe, Finland, Africa and beyond must be subscribers because of the regularity of their visits. I have also been surprised to see that my blog has been rated 4th in the top 100 blogs out there about breast cancer on Networked Blogs. That is fantastic! Now if I could just get all my readers to click follow on that widget in the sidebar–those ratings would shoot up even faster! (That’s a hint! ) It is really the one thing that has helped me process this mind-boggling year. Learning how to build a blog, learning how to set up new accounts that support that blog such as flickr and youtube, learning how to grab code and install widgets, learning how to format posts and hyperlink are all newly learned skills that I now really enjoy playing around with. Through it all, I have maintained a clear vision of what I want to do with the blog and where I ultimately want it to go. “If you build it, they will come”, I keep reminding myself.

The way I look at it is this, I am providing my children with a glimpse into their mother’s life. Years from now, whether I live or not from this, my children will be able to understand what their mom went through. My grandchildren will know something of their grandmother. My friends will remember the fight and have a newfound appreciation. It is always humbling for me to see that as I lurk around in the middle of the night checking out other blogs that I find mine in other’s blogrolls. They may be commentators or just part of that silent army that keeps me in their prayers, but either way–to all of you, I want to thank you for your continued support. Then, there are a few that have really helped my army grow. Friends across the country and the world that have quoted something from my blog and hyperlinked your readers back to me. There are community forums that I am blessed to be a part of and in doing so, I have met even more wonderful individuals.

One such woman came into my life just recently, friended me on FB and also proceeded to quote me in a post she wrote for an online news source blog out of Seattle, WA. Her name is Carolyn Harris and she is a writer with a very interesting background. She pens a blog called Lyn’s Circle: Chronicles of a Married Feminist. I encourage you not just to check out the excerpt she wrote about me, but also to check out her bio. When I read it (and to clear up a misprint–my nickname is cj not cy but no worries here) I couldn’t help but close my eyes and imagine what RVing through New Zealand or Sailing to Cuba must be like. I have had the pleasure of chatting with her and am glad once again that in this giant world, I know that there are others that are equally impassioned about spreading the word.

At the end of her bio she states:

“Lyn invites you to join her circle of friends. She feels sometimes women get stuck in their seats because it’s easier to sit there, do nothing and stay miserable than risk a change. She wants you to reach out. Your problem is not unique. Somewhere in this circle you’ll find another woman who understands your scars. With a little help from our sisters, we can laugh a little, cry a little, and figure out what to do with the rest of our lives”.

When I read this, I thought you were talking directly to me. When you came along, I was beginning to retreat once again into a pit of despair, thanks for pulling me out. It’s a never ending struggle to get my head back in the game, just when I think I’m making progress, I have a major setback. Unless you’ve been confronted with something of such life changing magnitude–whether it’s a health related or not, whether its directly or indirectly, you can only try and imagine what another individual is going through. Reality is quite a different story and since we are all on this Earth together, it’s comforting to know that although someone may not actually KNOW what you think and feel, there are common bonds that tie us all together. The biggest of these are love, compassion, and empathy. Thanks for coming into my life, Carolyn. Your presence is appreciated.

cj

Ok, Fine, I’ll Sign Up…

For over a month now, I have been sitting quietly back and wondering whether or not I should join in all the excitement over NaNoWriMo. It Stands for National Novel Writing Month. It’s a contest to see if you can commit to cranking out a 50,000 word novel in 30 days. Anyone who reads my blog can verify that I am usually not at a loss for words and my posts tend to run anywhere between 2500-3500 words. So, what’s the problem, then? I have two stories that have been brewing in the back of my head for the majority of this year and I would absolutely love to jump in. However…I just don’t know if the timing is right. I’m going through with the surgeries and the fills and opening up my home each week to observation after observation so I can look back and know that my professional goals for this year were met. But, as much as I want to just write on my blog every day, the details of my life take over and if I’m lucky, I will get two minutes at a red light somewhere just to check stats. By the time the day is done, I’m exhausted.

I was unable to really get through school this year and ended up taking the whole year off so I could clear my head, not worry about those deadlines and exams. I still haven’t filed my taxes for 2008 yet and now I’m needing to get 2009 ready. I have a daughter that lives across the state at the moment and be that as it may, I am still busy with conference calls, staffing calls, writing to her, and trying to get through the horrific mess she made in her room almost a year ago. I shut the door and expected her to clean it up. But, I am hoping she will come home and I know that as fragile as she is emotionally at the moment, the last thing she needs is to feel overwhelmed in her own room. I’m trying to come up with a system that will sort of resemble how she’s been living for the past few months so she will feel at ease as she re-integrates.

I know, I know–excuses. Here I am–the biggest cheerleader to those friends of mine that are participating and have been on the NaNoWriMo bandwagon for quite some time, and yet–I’m just not one to start something if I can’t finish it. Yet–again–I didn’t finish school last winter–aaarrrggghhh–back and forth–back and forth. I drive myself completely nuts sometimes just talking myself in or out of something. So, I’ve jumped off the fence. I’m going to try. If I don’t make the goal–then I don’t make the goal–but I will have tried. It’s process over product and I have posted that on my friend, Traci’s blog, An Unencumbered Life over and over as she has struggled with some of the same issues I have. I know in any other year, I could do this with my eyes shut. Why not this year, I ask? There’s really no reason good enough for me not to just jump in and try. Whether I write a little or a lot, I am going to try. It’s not about the content or the correct grammar and such as it is about just getting your story on paper. I’m going to tell my inner editor to shut the hell up and I’m going to write. There are so many people who do this around the world and I have been really amazed at the buzz about it. I listen in on Twitter and have been reading some of the forums. I joined a region–Iowa (elsewhere) because my particular region wasn’t listed. I have Traci as a writing buddy and because I see her everyday anyway (she’s one of my daycare moms), we can commiserate together.

The website is really pretty neat and I would encourage all of you to check it out if you’ve ever had a story in you that is dying to come out. If you make your 50,000 word goal (which is really only about 1700 words or so a day–honestly–half of one of my blog posts–that’s it!) then you are considered a winner. There is a section for young writers also and I have taken the time to print out the entire high school workbook and take it over to Kinkos to be bound. I sent it to Jasmine. She has filled 5 journals so far since she has been where she’s at and the story she will tell, I’m sure will be worth the read. I have also told a young girl I used to watch and now teach piano lessons to. She loves to write. I hope she joins and becomes a writing buddy of mine too. I know there have to be many of you out there that have heard of this, have participated in the past, have won, or have just thought about it. I would love to connect with you and become a writing buddy with you. If you hunt me up on the website, my username is cjheald. Don’t look at the word count generator because so far, I’ve been trying to work out the title. I have the book cover already in mind, just have to wait for my next surgery to snap a picture of it. I tried to post a word count graph so you could all see my progress, but can’t seem to get it to work.

I have a post coming up that is mainly pictures. I have spent the past 3 weeks debating whether or not to do this. I have been editing not for my sake, really, but for the sake of my husband who is uncomfortable with me letting it all hang out–or not. I am an open book these days. If I can help one person, then I have contributed. However, I am feeling censored in some areas and am wrestling with how to continue to tell my story. I have come to realize that I have many posts that are from this year that are filled with some strong language or content. Pictures that are more suited for adults than children and so I decided to have my blog rated. It carries an R rating and is really not suitable for anyone under 17. How can I monitor this across the world–I can’t–except to exercise some caution or restraint…hhhmmm…I’ll think about it.

In case any of you were wondering–this post is approximately 1150 words. I had two additional paragraphs that were quite lengthy attached, but have put them into the next post as they were more suited there. My main concern in the next two weeks is my taxes. I will be pushing the end of November with Nanowrimo–I hope anyway and there’s quite a bit coming up on here as well. Stay tuned.

I’ve Made A Decision…

Hey Everyone!!

This is as good a time as any to tell you that I’m headed under the knife again in just a day and a half. Wednesday morning–October 14th. 8am. I have soooooo much to do to get ready. It seems like I’m moving at warp speed. I have so many posts I want to get out, but just can’t get everything done in the time frame I have left. I have SO MUCH NEWS to report that for as much as I am getting really wigged out about this, I am looking forward to laying on the couch for a week and half–so I can sleep, blog, sleep, blog, sleep, and blog. I have pictures galore to upload and I have so many things I want to tell you all! I’m going to situate my computer, cell phone, and home phone on the couch along with the remotes, pain killers, bottle of water and puke bowl. I’m praying and hope you will also that I will be able to move my arm by the weekend so I can just type and click my mouse. I am praying for NO complications whatsoever.

For now–all I can say is that I need to get a million personal details attended to. I am determined to lay out at least a week and a half of full outfits for my son who will go to school in too small clothes if I leave it up to my hubby. I need to pick up more meds, mail off bills, contact my accountant (no my taxes aren’t done yet and I so don’t want to hear her get mad at me), volunteer at my son’s school for an hour, and clean my totally messy bedroom and put away tons of laundry. It will be a tall order and that’s just the half of it. I cancelled piano tonight and didn’t go to my wellness class so that I could start in on some of those things. I was hoping to get some of that accomplished this past weekend, but as usual, I was swamped. Saturday I didn’t have to work at the Arsenal and I spent the majority of the day birthday shopping for Jasmine who turned 18 on Friday, October 9th.

I also have the most exciting news. I received my first haircut on Saturday along with my little boy. I haven’t had that feeling since February when I was having a meltdown over the stylists boobs hanging in my face. My little boy needed one too and we both went to get a cut. My hair has been growing in all funky since it fell out in May. Super dark, super soft, very colicky, long, gray, faster-growing, wild ones sprouting out, it parts to the opposite side now, but not in a neat part–one that is jagged as heck, and the receding hairline that has plagued me my whole life on the side of my head that I used to strategically place my bangs is now coming in thick! Go figure!! I have noticed lately that the hair on the tops of my ears was actually starting to curl a little and get fuzzy–and I thought I’d better trim some dead ends. Maybe that would help it grow, too! I couldn’t believe my eyes–when the stylist finished–my head had a style again! Very Jaime Lee Curtis-ish!!! I loved it! Amazing what a makeover will do for you! Just what my self-confidence needed! I have plenty of pics to post, (bear with me) but here’s a teaser:

Lookin' Good! Feelin' Great!

Here’s the sunset that night shining brightly into the car allowing me to get these great shots of the new feisty haircut:

Super Spikey!

Short & Sassy!

Oh–and here’s one of Justin’s new-do:

Shark Hair

Have you all noticed that I’ve finally figured out how to use more than one picture throughout the post! Yeah!!

Since my car accident a month ago, the insurance companies have been haggling out who should pay and my hubby’s car is still not fixed. We had to break the news to her on Friday’s conference call that we wouldn’t be able to come up to see her over the weekend. She was devastated. We had already given her a heads up on Tuesday’s conference call, and I guess she took it pretty hard and the rest of her week didn’t go well. What she didn’t know on Friday when we called her was that we were totally blowing smoke. Jeff’s family let us borrow their fuel efficient vehicle and so we decided to make the 12 hour drive complete with an hour or so of pit stops just so we could surprise her and visit her for 3 hours. We’ve done it several times now and let me tell you–it’s exhausting to cram that much into one day and that many people into one tiny car for that long. So, that’s what we did on Sunday. When we got to Sioux City, IA we went into a back room while we waited for Jasmine to come in. When she got into the main room, we waited a minute or so and then we all busted out yelling “SURPRISE!!!” For a minute, she didn’t realize what was happening or who we were because she had resigned to thinking we weren’t coming up. She started crying and jumped up and hugged me sooooo tight and didn’t let go for the longest time. We had the best visit and I took the best pictures of her. Here’s the whole family together. Doesn’t she look healthy and happy!!

Heald Family 10-11-09

I have completed another observation to re-certify myself for ChildNet this morning. What a breeze that was compared to last week’s accreditation observation! I would love to get the State of Iowa’s Home Auditor out here as well–maybe tomorrow?–for a spot check and have talked to the Dept. of Health to come out the week I’m off to try and complete 2-3 of my spot checks for them. Since the house is clean and all organized and ready for me to be off duty from everything–may as well get as many people in here as possible to get some of those visits completed. I’ll just lay on the couch and they can do their thing. I’ll look like crap and probably smell that way too, but I know that from here to the beginning of next year, I won’t be able to do things–like lifting and hoisting kids–and I don’t want to go out of compliance on anything since many expiration dates will come toward the end of the year. I’ll work toward all other recertifications after the first of the year. Much to think about.

Through all the childcare hoopla, I have been under the most extreme pressure and stress to get the ball rolling with any additional surgeries I may want to have sometime in the future. Jeff’s job situation is getting very ugly and I am once again faced with the ever present threat that we will be losing our insurance not to mention Jeff will be losing his job altogether which will be devastating to our finances and all before Christmas. Sigh. My stomach just turns and the anxiety runs high because there are just too many unknowns that are still on the horizon and yet, all I can think about is that I may spend the next 40 yrs. plus–lopsided. It has spurned huge arguments and also great concern over a myriad of details. I’ll try to sort it out another time, but for now…

I’VE MADE A DECISION! A big one. There is much that went into this and it all came about pretty suddenly–like a week and a half ago. I’m moving forward on Wednesday with the first of two surgeries for a reconstruction. Yes–you heard it–I’M GETTING MY BOOB JOB!!!

I’ve had lots of tests to get ready for this.

EKG is good.

Getting all the electrodes ready

Placing the electrodes

All hooked up for my EKG 10-8-09

Bloodwork looks good. I guess my white count is good!!

AND–GUESS WHAT???

My first mammogram since January came back clean!!!! Even my No-Bo side!!

Remember I posted in the beginning that my kids always referred to my boobs as Bo-Bo’s as they were growing up? Well, now I have a Bo and a No-Bo according to my son. Gotta love the way he thinks! And in case you were wondering–when they tried to gather up all my backfat and any tissue left to squeeze in the pancake masher–yes, I almost fainted. There’s nothing left. It’s just too hard to imagine (unless you’ve been in my situation) how painful that was especially since I have deep tissue pain that persists and I gotta tell you, I almost threw up it hurt so bad.

I did, however, get to see 3-D pictures of the boob I lost. A lump formed in my throat as I stared at my old friend. All I could think of was how my children used to nurse from there and how much love that little round button produced over 9 years. I couldn’t help but stare wide-eyed at my boob. I hadn’t seen it in over 7 months. I missed it terribly. Then I looked behind the nipple and saw the cancer. The dragon that had fed off me and used me as its host for God knows how long. The tears were streaming down my face as the past 7 months of anguish and anger were replaying through my head. I heard that doctor’s words over and over and over again–all over again–saying, “Do You See What I See”. (Yeah! I figured out how to link back to previous posts!)

The only suspicious thing I have to report is a 3 cm. mass that has been found in my left ovary. Cyst? Tumor? Not sure. Waiting for the film to be read. My uterus looked good, though–no fibroids and no endometrial issues (thickening which might signal cancer). So, I will wait to hear back from him on the mass. In case your wondering–I convinced my new onco man, whom I just love, to give me the ultrasound I wanted. Here he is. He’s spunky and gives it back to me just as good as I let him have it. We laugh and he thinks I’m the most stubborn Belgian woman he’s ever met. I have to thank my dad for that gift!

He gave me some hormone testing that day as well and, at first, thought I was menopausal and that’s why I hadn’t had a period since January. So, he was going to take me off the Tamoxifin and switch me to something else–less chance for uterine issues (possible cancer) that could result from it. I received a call today, though, saying my levels came back and I wasn’t menopausal. I will need to continue the Tamoxifin for the next 5 years. He also said that my CA125 ovarian tumor marker came back with a score of 12!! I guess anything over a 20 is cause for concern so, I am breathing easier on the reproductive stuff down there and can turn my attention back to my top half.

My New Onco Man

With that being said, I went to see my plastic surgeon once again to just check with him about the possibilities and ask a ton of questions. I left a week and a half ago, ready to don my hospital gown once again and take a trip down the corridor and back into that state of conciousness where you are hovering somewhere between life and death. I was super confident that this was the decision I needed to make. I was WAAAYYY too busy worrying about Accreditation than to worry about my surgery. Then, my friend down the street, Denise, calls me late one night when I’m almost asleep and tells me to turn on the TV because Lifetime is airing the movie “I Wore Lipstick to my Mastectomy”. I’ve never seen the movie or read the book, but I’ve heard about it. She tells me to turn it on, so I did. I found myself shaking and reliving most of my own ordeal as I watched this woman’s unfold on the television. The part that really grabbed my attention, though, was where she goes in to have reconstruction. She is having the same kind I’ve opted for. Implant–not a tramflap. Had I needed radiation, an implant wouldn’t be an option, but since I didn’t, I’ll stick with an implant. The tummy tuck I would have gotten out of the tramflap was enticing, but I really don’t want to lose any core muscle in order to do it. It’s not as simple as it sounds and for anyone who ever watched Dr. 90210, or Nip Tuck, you know that just a straightforward boobjob has its risks. Mine is much more complicated.

I have nothing on the right side of my chest except a 10 inch scar. Nerves have all been severed. No feeling on the surface. When they cut my boob off, they had to cut all that skin off too. The top of my chest was stretched down and the bottom was stretched up and where they met in the middle–they sewed me up. It’s taught, concave, and in order to make any kind of mound there to level me out again, the skin and the muscle will all need to be painfully stretched out. How? By inserting an empty bladder (looks like a deflated woopie cushion) under my pectoral muscle. They will have to cut me back open, lift the muscle off my chest and insert the empty bladder. A port will be left in place. I will be sewed up and will heal for two weeks. After that, once a week, for 6-8 weeks, I will go back and have a ginormous syringe filled with saline injected slowly into the port. It will fill over time. Actually, it will over fill and I will have a huge cyclops boob on my chest for a couple months. That will allow enough give once the real impant is put into place. The saline insertion, I have heard (and I saw on the movie), is extremely painful. I didn’t know this. Actually, I just didn’t give it much thought. After the 6-8 weeks, I will go in for another surgery where the bladder is taken out and the new implant will be put into place. The other boob will get a lift and a small implant if necessary to attempt symmetry. Barring any complications, that should be it. Are you still with me? You haven’t passed out yet, have you? So, I am now–just now–literally hours away from this surgery and I am beginning to get cold feet.

I wish I could say that my new Bo will look like my last one. It won’t. I am going to have to accept that, but I have also seen this doctor’s work up close and I can confidently say that he is meticulous. I’ll have to let it heal for some time before having the areola tattooed on. I can choose to put a nipple on or not. To do that, the doctor takes a circular skin graft from the inside of my thigh (wish he’d take half the crap that rubs together while he’s down there and maybe inject it back up into all these worry lines I’ve accumulated this year –lol) and he makes a slit in the mound. The patch is folded over to resemble a nipple, inserted through the slit in the mound and sewn into place. HOW FREAKING WEIRD IS THAT!!

The biggest question I have asked myself is, “Is going through all this-worth it?” You’ll have to read my upcoming post to get a sense of where my head has been and how I came to my decision. For now, I’ll leave you with that question and since it seems like I have a ton of readers, but only a few commentators–I’m going to ask that you comment and tell me what you would do–honestly–think about this. Really try to picture yourself without a Bo or both. Try to imagine what it would do to your self-image, confidence, sex life, ability to wear pretty bras, or a normal swimsuit. If you were faced with losing insurance that would pay for the job, would you do it? Let me know your thoughts. I’m going to be stuck on the couch for a week and a half alone in the house while everyone is gone and I’m going to need some kind of interaction. Leave comments and even if I may not type right away, I’m going to be reading them. Keep me in your prayers and I hope to be back to tell the tale, soon.

Ciao for Now–and keep your fingers crossed for me. cj

She Loves Me, She Loves Me Not

Remember I said I was going to put the provider checklist manual down on Sunday night and walk away? Yeah, that didn’t happen. I worked into the wee hours double checking all my paperwork, files, and steam cleaning carpets. Really the list was so lengthy and I got so much accomplished this past weekend that I look back and wish I could clone myself and have that much energy every day. Take away all the nervous energy that was building and I would be superwoman once again. Fell asleep about 1:30am and got up at 5:15am to greet the first daycare child to arrive. Another child stayed home that day and for the majority of the day I only had two toddlers. They napped great that day and I was able to start in on finishing touches to my environment and making sure my last minute To-Do list for Tuesday morning was in place. With all the vacuuming and steam cleaning there were a lot of child proof caps that had been taken out of electrical sockets and it was all that tiny stuff that needed to be checked over one last time. I also needed to remind myself not to leave a lipstick out on the counter–I did that once–and I’m here to tell you–that’s a no-no. Dumb, right?–afterall, it’s non-toxic. I mean, what’s the worst that could happen if a child did get ahold of it?–mark all over my walls with it?, play dress up with it?, eat it and poop pink for a couple days afterward?

Monday night I prepared my lasagna in advance and plated and filled all fruit bowls and milk/juice cups in advance. Jordan and Jeff helped me with details also and by the time I had gone over my last checklist for the hundredth time–I went to bed at 2:30am. I woke up at 5:15am and greeted my first arrival at 5:30. I quickly started in on making and baking morning snack–pumpkin bread. I wanted the house to smell cozy and spicy when the observer came in on that rainy morning. While the house still slept, I got ready and then started pacing. My good friend, Becky, called to wish me luck and together we went down any last minute “Did you remember to’s”. She’s already been through this process and has been a great resource for me. After hanging up, I wondered why I do this to myself. Becky is just like me and can completely relate to my desire never to be considered “Good Enough”. I can’t be perfect, but I try awefully hard to be amazing in my profession. The ultimate receivers of this awesome-ness are the children and that’s what its all about.

The observer arrived at 7:15am and got settled into her chair in the music salon–which also doubles as my infant/toddler room. The rest of my families arrived and for the first 1/2 hour or so I was hyper-ly worried about this or that, but I ultimately had to just let it go and do my thing. She was either going to like me or she wasn’t. I just had to do what I do every day with the children and as I worked with them in various domain areas–music, science, math, language, art, gross motor as well as fine motor activities–she shadowed us around the main level of my home. At one point around 9:30 am, I looked up and she was wiping tears out of her eyes. I immediately thought,

“Oh no, what in the world did I do that I wasn’t supposed to?”
“Does she need to pee and she’s sitting on the barstool holding it?”
“She didn’t just start her period and she’s afraid of getting up off my chair, has she?”

I asked if everything was ok and would she like a drink of water or something. She replied, I have to tell you, watching you has moved me to tears.”

(In a good way or a bad way I wondered quickly)–so I asked.

She laughed and added, “watching you work with these children is magical. I’ve heard of providers like you, I’ve seen environments like this in training videos, but I’ve never had the opportunity of experiencing it first-hand until now. This is what childcare should look like. This is what childcare should sound like. This is what childcare should be. I’m in awe of how they all look at you and respond with enthusiasm and wonder at what your going to talk about next. I am in awe of how they apply the lessons that are being taught. I am thinking back just a few hours ago as I was facing a more than two hour drive on a cold rainy morning to come to a home where it was probably just going to be ‘ok’. I can tell you this really is so much more than ok–it really is the model.”

I beamed. I mean it. I think there was light being reflected off the extra 30 pounds I’ve gained and casting a huge glow around me. She likes me. No, she didn’t just like me. She loved me! All that worry–all those details that probably didn’t matter–or maybe they did?–all those sleepless nights wondering if I would measure up to be good enough in my profession. Why did I do that to myself? There is really one thing that has been unwavering in this year filled with uncertainty and that’s my relationship with the children I watch. My ability to “Bring It” each and every day even when I am feeling down, even when I was scared to death, even when things seemed bleak–there is no faking that. That’s all me. Genuine and 150%. I knew then that once I had let go of the worry of her liking me–she would see me for who I was and my passion would come spilling out over the banks.

She stayed and observed for a little longer and by 11:10am–way before she had even observed me serve lunch–she said she was going to go and get a bite to eat and would be back at 1 pm for the interview portion once all the kids had gone down for a nap. Again, I asked, “Is that good or bad?” I asked her if everything was ok and why she was leaving so early. She laughed and said, “I was done scoring you in the first hour and a half. I have never been in such a rich environment with such incredible interactions.” I said, “You haven’t even seen how the kids play downstairs yet”. She looked at me incredulously. “There’s more?–I was blown away by your main level”, she replied. I smiled, then. I told her to go have lunch and come back ready because the best was yet to come.

When she came back, I took her downstairs and instantaneously, her eyes got watery once more. I took her around explaining my art and music program. I explained the centers and how they are used. I explained that I am the best of both worlds–a homey feel with lots of natural learning experiences upstairs and more of a center feel downstairs. She was in awe. She quickly started talking:

“I thought about this all during lunch and I would really like to ask you a few things. I really hope you give consideration to these things because I truly feel you would be the kind of person we need to really change the face of childcare in Iowa. What I am proposing is this:

1.) I would like to nominate you for the State of Iowa’s Childcare Advisory Council. You will have a say in how different issues that legislators are debating get pushed through.

2.) I would also very much like to make an appointment with you to come back and bring a couple people from NAFCC so they can meet you and see you in action and I would very much like to know if we could videotape you in your environment with the children so that we could begin working on a new series of training videos that will go out statewide as other providers are going through the process of being accredited.

3.) I am wondering if you might agree to getting a webcam so we could conference in with each other and a few others so they can learn from you and see you in action.

4.) I would also like to really ask you to consider presenting trainings in my area and beyond and I would really like to book you for a huge March 20, 2010 childcare conference I am in charge of organizing. Perhaps the keynote speaker and then an extended class afterward.

Now I was blown away. “I am so thrilled that you’ve enjoyed your visit here and I would be very happy to entertain any or all of those things, but I am going into surgery again in one week and I will need one more surgery by the end of this year as well. I need to do a lot of recuperating and I’m sure the March 20 date is do-able, and if you and I could re-visit some of these additional options at a later date, then that would be more conducive for me in terms of what I’m going through right now.

She was thrilled and said, “I’m so excited. I am soooo glad I was called to come to your home and meet you. I am so excited to really start working together!” “I am too!”, I replied. I was thinking that 2010 may be my comeback year. I was thinking that I was glad I had made the earlier decisions to have more tests and surgery and that way I could close the chapter on 2009 and not look back. I would start living again–fully. I would meet new opportunities and challenges with a renewed conviction and I would keep moving forward with a positive outlook.

We moved upstairs for the interview portion. I was wondering if I would get to see all the notes she took earlier that morning, but that quickly faded as we chatted at my kitchen bar like two old friends that hadn’t seen each other in ages. She said, “Do you see this book? Usually I have a ton of little sticky flags sticking out of it signaling that I didn’t see something, or you met the criteria just partially. It’s then that I have to go back and ask the provider to explain more fully how they do things or to show me something I didn’t see. I want you to take a look at how many sticky flags are sticking out of this large book.” I obliged and I counted–one, two, three. That was it. Just 3 points she needed to check and then the interview would take place. I smiled when she told me what she was looking for–can you guess? Yep, she wanted to know if I had posted the instructions on how to use a fire extinguisher! Hahahahaha. I quickly jumped up off my barstool and opened the pantry where the unit is kept and said, “Why, yes, in fact, I do!” Since she wasn’t here to see me lay the children down for naps, she asked how that is done and of course I replied, “on their backs”. The third point–I’ll be honest–I don’t remember because I was still laughing inwardly about the signage I had posted just that morning before she arrived regarding my extinguishers.

The interview lasted about an hour and after completing that successfully, I walked her to the door. We exchanged emails and information and made a time to get back with each other again soon. It was an incredible day filled not with worries, but opportunities. The children were wonderful and cooperative and there were no power struggles about anything. It wasn’t long after she left that the kids started getting picked up. They were all gone early that day and for 1/2 hour, I crashed on the couch. I woke up to what seemed like just 5 minutes later and found myself laying in a handful of drool. Gross, I know, but just goes to show you how sleep deprived I had made myself. I spent 1/2 an hour running my kids to extra curriculur activities and then took myself to my childcare class that I had to leave early from two weeks ago because I was sick.

I sat down by a woman I barely know but had taken a few classes with. Her name was Carol and she immediately leaned over and said:

“I’m glad you’re here, I made you something”.

“What?”, I said. Then she handed over this very large pink and white Land’s End canvas bag.

“I made you something”, she said.

“For me?” I asked. I mean–I didn’t even really know her. Why would she make me anything?

She smiled and said, “Open it!”.

When I did, the tears popped into my eyes. I was so overwhelmed and touched by what I saw that I was at a loss for words–so unlike me. I looked up at her and said, “You made this for me? Why?”

“I wanted to”, she said.

I asked her if she had breast cancer since she was wearing a ribbon. I asked her if any sisters or her mother or any female relatives or friends had breast cancer. She simply stated, “Nope”. Then she added, “I just felt moved to make that for you. Maybe you’ll be able to use it.”

“Actually,” I replied, “I am having surgery in a week and will use it everyday as I recuperate on the couch for a good week and a half.”

Her eyes got wide and she said, “I knew there was a reason I needed to make that for you.”

I couldn’t believe it. It wasn’t like it was a potholder or a homemade candle or a plate of cookies or something that wouldn’t require a great deal of time–No–inside this very nice large tote, was a quilt. A pink and white quilt. A beautiful and simple expression of her heart and it was stitched with a large pink ribbon on the back. In the corners were quotes and other messages about “Quilt Pink” and “Generous”. This is what they said:

Quilt Pink
Better Homes and Gardens American Patchwork and Quilting, and Husqvarna Viking are bringing you Quilt Pink Day!

Calling quilters of all skill levels! Bring a friend and together we’ll support the fight against breast cancer. Better Homes and Gardens American Patchwork and Quilting have joined forces with Husqvarna Viking to make a difference and help find a cure for breast cancer.

Quilt Pink fabric collection commemorating a joint effort between Moda Fabrics and Better Homes and Gardens Patchwork and Quilting magazine to sponsor the first-ever Quilt Pink Day, observed on Saturday, September 30, 2006.

I purchased ten different pieces from the Moda fabric selection to make a quilt on that day but I was sick that day and wasn’t able to participate. This quilt is made from those fabrics for you.

A portion of the purchase price of the fabrics were donated to Susan G. Komen for the Cure.

The next big piece just states over and over again: Quiltpink.com by Mae & amp; Nobie for Moda; Me and My Sister Designs for Moda, and www.modafabrics.com

Generous
That’s the first word that comes to mind when we think of quiltmakers. The reader’s of American Patchwork & amp; Quilting magazine have repeatedly proven that to be true, our first fundraising event, Quilt for the Cure, brought in nearly 25,000 quilt blocks which were made into quilts and auctioned on eBay, raising $100,000 for breast cancer research. When we announced our plans for Quilt Pink a year later, the response from quiltmakers and shop owners was overwhelming.

More than 1,100 quilt shops and guilds around the world–from all 50 states and nine countries signed up to host a Quilt Pink event. On Quilt Pink day, September 30, 2006, estimates of more than 100,000 quilters spent the day cutting, piecing, and quilting the nearly 1,000 quilts that were sent to us the following spring. We then auctioned those quilted treasures on eBay and as this book went to press, we were on track to contribute $200,000 to Susan G. Komen for the Cure benefitting breast cancer research.

As you might imagine, that many quilts offered a wealth of inspiration from one-of-a-kind pieces to creative combinations of favorite patterns. Many quilts also came with stories. To celebrate the creativity and share the stories, we chose nearly 100 quilts to present in Quilt Pink for Hope. In keeping with the intent of the Quilt Pink events, we are pleased to contribute a portion of the proceeds from the sales of this book for Susan G. Komen for the Cure.

To participate in future Quilt Pink events, visit AllPeopleQuilt.com to find shops in your area that are signed up. Then contact the shop to see how you can get involved. Togeter quilters can make a difference in the fight against breast cancer.

Happy Quilting

The Editors American Patchwork & Quilting magazine

The last square that had something written in it came from Carol herself. It read:

This quilt may not be a masterpiece but when you’re not feeling on top of the world and in need of comfort, put this quilt around you and know someone is thinking of you.

Made specially for you by:
Carol West
Davenport, IA–September 2009

I looked at Carol and asked, “Do you want to be friends?” She smiled and nodded. I was touched. I was completely amazed that there are these angels that walk among us everyday and when we are needing comfort–they are there with open arms. Many times we pass them by and never realize the hidden treasures they will bring to our lives and then, when we least expect it, they make themselves known. We spent most of the class talking and laughing instead of paying attention. Luckily we sat in the back of the room!

I came home to show my hubby and he was truly amazed. He looked at me and said, well, you deserve to snuggle up with your new blankie and relax tonight. You had an amazing day and I have built you a fire to warm up to on this rainy night. I bought you a big bag of marshmallows to roast in the fire and why don’t you just watch some TV and relax. I changed my clothes and as I snuggled down on the comfy couch with my new comfort quilt feeling the warmth on my face from the fire, I thought back on my day. I had made two new friends. I was loved. I was cared about. I was home–my most favorite place to be. I was surrounded with family and as I was counting my blessings, I realized that the petal I had picked that day from my observer’s flower was stamped with, “She Loves Me”. The past week had been filled with epiphanies, resolutions, and renewed convictions. I was beginning to see–the light. It was warm and burning bright that night and the possibilities seemed endless.

(pics of my quilt are in the sidebar)

Swimming in a Sea of Details

I’m swamped. There are so many details I’m attending to in order to ready myself for my National Accreditation visit which is coming up on October 6. I’m sure things are fine as they are now, but this means so much to me and for a year and a half prior to 2009, I worked steadily toward this observation knocking out one quality benchmark after another in the process. Some details I think are just redundant, for example, I have to have the instructions on how to use a fire extinguisher POSTED by the unit itself. This is sooo dumb, in my opinion, since all my fire extinguishers have the directions and pictures of how to use them right on the extinguisher itself! And I’m sure in the event of fire–I will be too harried to read a wall full of instructions. Thank God, I have attended enough fire safety classes and have enough knowledge of how to operate one–like it’s rocket science, anyway–duh…

I will be working diligently all weekend to finish up all details–I hope. The weather has been cold and raining for two days now and I will be busy shopping for last minute items, steam cleaning carpets, mopping floors, planning out/cooking all my food for the day so I don’t have to worry about prep time, and going back through my manual at least once if not twice more. To me, that is just the tip of the mountain I will need to climb this weekend. Come Monday, I don’t want anything left to worry about. I want to sleep that night, but I’m notorious for staying up all night fretting. I’m sure I’ll do fine, but there’s always the chance that they feel I’m not ready…Lord knows my world has been shaken up this year and it has taken all my energy the past few weeks to get back in the saddle and really hunker down. I need everyone to keep their fingers crossed for me! I really want to knock this out of the ballpark! I want this lady to leave my home with a smile on her face and the assurance that really good stuff is coming out of my unassuming home and contributing to the lives of little ones in positive ways each day.

I have heard that compared to the FDCRS–Family Day Care Rating Scale–the accreditation process is a breeze. I voluntarily went through that process a couple years back and it was grueling to say the least. The criteria that you are rated on is extensive and overwhelming at times, and when I look back from where I started to where I am now, I am glad I went through it, it totally transformed my environment and that has helped out in a bazillion different ways. The national average for a rating is a 3 on a scale from 1-7 with 7 being the highest rating you can achieve. I only know of one other gal that went through it here and she received a 5.something. I remember thinking that she really nailed it and never thought I could top that. Then, I set my eyes on the criteria and systematically and methodically started fixing every flipping thing you could imagine–and trust me-most people don’t have a clue what that entailed. When that observer came, I was ready. I was more than ready and I couldn’t have orchestrated the day any better if I had tried. The kids were angels and boy did I reward them for their good behavior!! Lots of ice cream!! I will never forget the day when I got my rating in the mail. A 6.3!!! It was absolutely one of the best days of my life.

Then I jumped onto the Quality Rating System and decided I wasn’t going to just jump in at a level one star, I was going for the top dog, a five star rating. I could use my FDCRS score, my newly met CDA (child development associate), my ChildNet re-certification, and my partnership with the Department of Health among a host of other things to earn the points needed for that 5 star rating. I swear, that parents don’t really have a clue what some of us providers will undergo to ensure safe and high quality homes and qualifications. An average old “baby-sitter” I am not and yet, when families drop out of care to go to a provider that’s just “good enough” it makes me just shake my head and wonder why I put myself through this. Mainly, because it is my passion and because I am committed to providing quality early learning experiences to kids in the Quad Cities.

Getting ready this time, though, has been different. I am tired earlier in the evenings and can’t stay up all night like I used to working on this or that. I get so tired it feels like I’m drunk and I hate that feeling. So, I will get done what I can in the next two days. I will try not to over-detail myself. That’s sooo hard for me, though–each time, I think–yeah–I think I’m done, I look up and re-analyze how I’ve been doing something and make another list of how I could do it better. I’m going to let it go as of Sunday night. I will. I think. I am going to try really hard to put the manual down and walk away and trust that I know what I’m doing and that it will come across and look effortless. I just hope the observer is in a good mood that day and hasn’t just gotten into a fight with a teenage child or a husband who has just asked for a divorce or gotten or anything else that might put her in a really icky and hyper critical state of mind. I don’t want anyone taking anything out on me that day. I hope I don’t get some man-eating shark that comes swimming into my sea and tears me limb from limb.

It all boils down to that insecurity that someone isn’t going to like me or will pick me apart. It’s that need to feel accepted–a basic human need we all share. There have been great portions of my life where I didn’t care what anyone thought of me, and it’s so weird–I used to feel so uber-confident about everything in my life. This year has really knocked me down a few notches, though. As much as I shouldn’t worry about what others think–I do. I think it’s because I haven’t been able to come to terms with how I feel about myself right now and that really projects outward. Also, I have really had outward signs of people I thought were friends rejecting me this year, my oldest daughter rejecting me, my own body rejecting me, and I’ve even found myself rejecting my own image for the majority of this year. In the grand scheme of things–what’s a year?–a tiny blip on the face of time. But to me, it has been excruciatingly long. At some point, all that rejection over an extended period of time starts to affect your confidence. It starts to waver like a spinning top that becomes wobbly right before it topples to the ground. Rejection is a part of life, I know–I preach it to my kids. It’s how you handle it that is the true test of courage.

I’ve been on the fence with that one. When it came to those so-called friends–I moved on–had to–it broke my heart to much to dwell. When it came to my daughter, I moved on at times–but kept getting sucked back into the vortex. When it came to my body’s rejection and my own self-image issues–I have wobbled uncontrollably–just like that spinning top. When it came to my spiritual well-being, I have found solace in my bible and my new church home-even though I am not good about regular attendance. Have I passed the test? Depends on what areas we’re talking about. I’m sure if I were to see the report card, I wouldn’t be happy with the grades in most areas. As with any struggling student should do–I have assembled a few tutors–a few individuals that are helping me put things into perspective a little better. Up until now, I haven’t really reached out for support–a little here and there, but now I am starting to see that in order to get through this–I just can’t do it on my own. Nor do I want to, but I just hate burdening anyone with my troubles or imposing on them for their time. So, I have retreated into my shell on many occasions this year just as the wise sea turtles do as they make their epic journeys through the oceans of their lives. They retreat for respite, for survival, for a need to become invisible at times so that when they do emerge they are renewed in faith and energy to stay the course.

Maybe I was supposed to lose my confidence to really find the source of my true strength. Maybe I was supposed to be humbled so that I could remember all the reasons why I do what I do and to try and let go of those insecurities and not let them get to me as much. I know all of this. My brain really does. It’s just my heart–its been really shredded up this year and its hard to be that confident right now. I could fake it–like I did back in high school…I could… I’ll really have to pull it out for this one. I’ll really have to squelch those feelings down and let “Tina” shine through. It’s really the only thing I know how to do well at the moment. So, that’s the plan–sort of–along with a lot of prayers.

So, I’m going to be busy for the next few days, but boy do I have news for all of you! What a whirlwind week of doctors and medical tests with more on the way, but out of it all, I made a decision. A big one. And I wish you could have seen the genuine confidence dripping from my grinning lips! I poked my head out of my shell this week and I smiled at the possibilities that are in store…I’ll be back to update as soon as my observation is over because my brain is swimming in a sea of details regarding this decision as well and I will need to purge SOON!!! Until then, check my tweets for quick snippits.

Ciao for now–CJ

Sick and Tired

I have been under the weather for almost two weeks now. This past weekend I spent almost all of it in bed sleeping off this crud. I don’t know what it is and it tends to worry me. As much as I hate to see other family members ill, I’m really glad they all have what I have–it means, in a way, that this is probably not cancer related. It is just kicking me in the butt much harder than everyone else. Then Justin came home with a letter from his school saying that there was a confirmed case of H1N1 Flu present in his school. It really wigged me out. Lots of disinfecting, sanitizing, and handwashing going on here.

I had my yearly physical last night. I sat face to face with the woman who didn’t listen to my moans and groans for a year and just thought I was in need of Xanax or Prozac or both. I know she felt bad, but instead of rubbing it in, I just filled her in on how the year has gone. I wish I wouldn’t have been overtired and wiped out from my huge cold. It makes me more emotional and when she was asking me big questions, I just couldn’t help it, I started crying. God, I wish I wouldn’t have done that. Then, she thought she was right in her initial assessment of what kinds of medications I should be taking. That made me even more upset because why can’t someone just cry anymore without someone thinking they need to be in a doped up state just to relate to what’s going on in their lives. She has put me off to the nurse practitioner all year–since my diagnosis. I’ve been mad at this doctor for a year. Last night I was just too tired and feeling like crud to tell her how I felt about that. The one thing I was really hoping she would help me out on was my request to have an ultrasound done. She wouldn’t. I cried. Again.

Do I think I need an ultrasound? I don’t know. Do I want an ultrasound. Yes. I worry constantly about this metastasizing to my ovaries or my uterus. Pap smears only detect cervical cancer and I will admit–that as unpleasant as those exams are, there are worse things and usually they never bothered me much. Last night–my first one since all this has happened to me–was more anxiety-ridden than any other I had ever had. I had to sit on my hands so she wouldn’t see them shaking. What if? What if something comes back on that? It’s been 7 months since my initial diagnosis–what could happen in that time frame? I know the tumor that was found was said to be a grade three–most severe–even for as tiny as it was and that it was multiplying very rapidly. Could other radicals have found a host by now and be multiplying elsewhere?

Could it be that this is the reason why I am soooooo exhausted anymore? I just can’t believe that a few months ago I had been working and studying 20 hours a day and getting 4 hours of sleep–if I was lucky–every night for three years. Now I can barely see straight come 7pm.

Is my body once again growing and feeding some dragon inside me? Without anyone willing to let me have an ultrasound or pet scan–how will I ever know? I would just like ONE of each–a baseline–to know where I started and that way if I was feeling symptoms of something they would have a marker of where it has come from. Especially now–when Jeff may be losing his job and that will result in a loss of insurance benefits–which makes me pre-existing almost everywhere else. While I have the insurance–just let me do it! Why can’t the doctors code it so it doesn’t look like it was routine? Why does it have to be assumed to be–especially when the initial cancer diagnosis is the underlying reason for wanting one in the first place. I just don’t get it. It makes me so angry. It makes me cry, because I just don’t feel like I’m being heard or that I am just another cancer patient. Trying to “live my life” as my first oncologist told me to do is nearly impossible at times. Its not the same. I don’t think it ever will be no matter how hard I try to carry on with a smile on my face. It just masks the deep pain I feel over the unknown.

Then again–would I really want to know? What if the scans came back and I was glowing like a fire cracker? Would I really want to see that? Would that make me even more overemotional? Probably. But–why wait until you have symptoms–then it’s too late. Wouldn’t you want to know if you have a huge brain tumor or spots on your lungs, or tentacles wrapped around your ovaries? The quicker you can have surgery and cut it out–the better your chances–right? I know it all sounds irratic, but these are the thoughts that keep me awake at night. It’s hard at times to forget, and I make it harder on myself when I don’t follow my nutrition regimine that my nutritionist has worked with me on all summer. Or when I forget to take my Tamoxifin. Major guilt trip. I feel like I have some sort of control with those things or with the exercising, but I am still partly in denial and not being consistent. I have not fully jumped on the bandwagon–I did early on, but now I am falling off and being drug by the cart. I know I need to recommit. I know.

Could it be the Tamoxifin that’s wiping me out? I know it has played a part in my early menopause and with that–could that be making me so tired? Speaking of the Tamoxifin, I tried to see if I could have the doctor’s office prescribe all 5 yrs. worth of meds. in advance. I am terrified that we won’t have insurance and I will not be able to even afford the cost of my prescriptions each month. I have no idea what the cost is, but it doesn’t hurt to ask, right? So, I called there and I didn’t even think about the shelf life factor until the nurse pointed it out. She also really sounded odd and then she told me that they could only refill the Rx monthly so that individuals would be less inclined to sell the drugs elsewhere. Oh my gosh, great, now my oncologist’s office thinks I’m a pill pusher on the black market somewhere and I will be watched for that. It made me laugh in a way and then I realized that there are probably thousands of women in just the same boat I’m in–if not worse. Think about all the women in third world countries who don’t get the Tamoxifin. Then, I think about how I live in America and I will be considered pre-existing here pretty soon–unless an insurance miracle happens and Jeff gets a new job without a pre-existing condition clause.

Is it that it takes a very long time for your body to recover from chemo–(even though I only had one full treatment before becoming severely allergic and going into respiratory arrest)? how long does it take before your energy levels return? Do they?

Is my body fighting against something or just trying to still heal? I know 6 months later, my body is still not draining the lymphatic fluid correctly. Only two lymph nodes were taken out in surgery and my body should have, by now, compensated and learned how to move the fluid through my body. But it still pools under the scar tissue in my chest and it is painful. Weirdly–the whole top of my chest is numb–all the nerves severed, but deeper–around the muscle–it’s still terribly painful. How long will that last? Will it last forever? Is it my body trying to tell me to lay down and get vertical so the fluid can move better? Is my body just working overtime? I do worry about that lymphedema every day and knowing how its pooling in my chest doesn’t help my worries. The surgeon doesn’t seem too worried although in my 2nd followup with him two weeks ago, he was concerned about the continued pain factor I’m having. He didn’t suggest anything, though–so I guess I just live with it.

Will I ever feel the same?

Will my psoriasis ever go away? It seems to be worse these days and that was one of the first indications that I found that alerted me to something being wrong. I know stress exacerbates psoriasis and I am truly amazed I am not covered head to toe in the stuff. Be thankful its just on my elbows, right?

Is the constant stress of the cancer, my self-image, my oldest daughter, how everything is affecting my younger children, my husband’s impending job loss, the uncertainty that will bring to us financially, the loss of benefits, the mounting medical bills for me and for Jasmine, the stress on our marriage and all of our relationships just taking its toll and no amount of counseling can really fix ALL the triggers at this point?

Once this metastasizes–it is really hard to detect if it goes to the ovaries or to the uterus. Why can’t we just schedule a hysterectomy at this point. I’m really inwardly wigging out about this and even though my new oncologist doesn’t want to start “butchering” for no good reason especially when the genetic tests have all come back fairly positive–I can’t help but think–Isn’t cancer a good enough reason? I suppose if I wanted it done badly enough and threw a big enough temper tantrum–I’d get my way–but am I just being over reactional about it? If I’m no longer using the stuff–take it out. That’s three less places for this to land and I will know that I am not going to die from those associated cancers.

Sigh. Sometimes my brain gets so ramped up with these thoughts that they just spew out onto the page. I have to keep coming back to my bible to try to help quiet myself. My goal of self-quieting has been a hard one to tackle this year. I think it also gets revved up as my doctor visits start coming. I will go see the plastic surgeon tomorrow to talk about reconstruction–something I totally didn’t think I was ready for, but with the possibility of losing insurance and the fact that they will now pay for a boob job–I’m going to talk about the options. It may not even be an option, but I have to go and check it out or I will be mad at myself if I let the opportunity slip away. Next week, I see my oncologist for a 3 month check up. I hope we will look at bloodwork and see if anything shows up there. I don’t know what I should be asking him at this point because I just feel like everyone wants me to “live my life”. If any of you have any questions I should be mulling over for him, please let me know. I would welcome them whole heartedly.

I received my long awaited call from NAFCC (National Assoc. for Family Child Care) that my long overdue national accreditation observation is about to happen. I have been working on it for two years. I applied for the observation the end of December 2008. Normally, you should get a call between 4-6 weeks to schedule the observation. Here we are 9 months later and I will finally undergo this on October 6, 2009. They have been swamped since revising their re-accreditation standards and since I am a newbie, I guess, I was not a priority. I often think of what that would have been like should I have gotten that call within the normal time period. I was just getting diagnosed with breast cancer. I would not have been ready for that at all. Looking back, I really am surprised I made it through the summer and really glad that this observation is coming while the house is quieter. I guess I should be grateful that it is happening after my mastectomy, after all the big rowdy boys went off to school, after a regular naptime had been re-established for the little ones, and after my head came back from Bizarro World.

Since this call came through, I haven’t been able to think about too much else in the past week–including the cancer stuff and I have truly welcomed the break. It makes me realize that when I am working on something I’m passionate about, I get a lot accomplished————(Why can’t I get truly passionate about my cancer?)———- I’ve been going through all my checklists making sure all my T’s have been crossed and my i’s have been dotted. I have a book that takes me a few hours to get through each time because I am really focusing on doing my best. I have been through it several times and plan on several more read throughs. I spent all last week working on my parent teacher conferences and getting those in order. I was glad to get them all done so I could move on to more paperwork that has been lagging. I screwed up my classes this year, but I am not going to screw up this. I have worked too hard. I want to be able to look back on 2009 and know that despite the huge setback, I was able to accomplish this major accomplishment. Usually centers or schools or colleges are accredited. It isn’t that often that in-home providers become accredited. So, I am working day in and day out right now and everyone in my family has their very own honey-do lists. I’ll get there slowly, but surely and quite honestly, I’m ready–its just the details I’m going back for. Tons of details, but it will all come together.

I’ve also been allowing several college students studying at St. Ambrose Univ. to come tour my environment. This is good practice for me as they are able to give me fresh eyes. They are students studying to be teachers–how I wish I could go back to school–but I am not ready yet. Maybe next year. Maybe this is why I was supposed to ultimately take the break from my college courses this year. To ready myself for accreditation. To make sure my head was still in the game. I can honestly say that I was in a perfect position to give up on everything I had worked for professionally. Just chuck it and spend my days playing with my family. It was a summer where I was re-evaluating everything in my life and trying to figure out if things were still working or if they needed changing in some way or another. When I look at my chosen profession, I can’t imagine doing anything else. I love working with kids. I love where I work. I love the tools I get to work with! Some people provide child care as a means to an end, a temporary job while their own kids are young, but me–it really drives me. I absolutely love what I do and when I had really looked at all the reasons why I do what I do, I realized my head was ready to take on the observer that would come spend the day with me. If I could just shake this illness now…

We celebrated my son’s 6th birthday this past week. Time flies. I asked him what the best present he got was and he looked at me and told me it was me and that he was super happy I wasn’t dead. “Gee, thanks, babe–I love you too” is what I responded with. I’m grateful I got to see him turn 6 and I am glad I’m not dead yet. Lord knows how I’ve worried over that all summer. So, I’m grateful I’m alive. I’ve survived my diagnosis for 7 months now. Almost a year. That’s an accomplishment in and of itself.

I have begun a Wellness class at the YMCA. It is 12 weeks of free personal training–2X/wk. for 1 1/2 hrs. each eve. The best part–its free! I get to work with a personal trainer for free for 12 weeks! I missed the first class because I was sick two weeks ago. I went to both classes last week and thought I was going to die each night. I began working on my WII fit on the off nights, but this cold/flu is really pulling me down. I am so happy for the outlet and MAKING ME a priority. I have met a handful of other breast cancer survivors that are in various stages of their disease or treatment and I just know that will be instrumental in my mental comeback. I think being able to dedicate time to working out will also help me release those endorphins I haven’t seen in a very long time which will help relax me, help me sleep better, make me feel like WANTING to recommit to my nutrition plan again, making me WANT to be more consistent with my med taking, and maybe inthe process, I will lose the 30 pounds I’ve tacked on. UUUGGGHHH! I am bigger than I was when I was pregnant with Jordan (she was the biggest baby)! Could it be the Tamoxifin that is helping me pack on the weight? I know that stress will pack on the weight also and I am surprised I’m not morbidly obese. The added weight make me more sluggish so, I have to lose it.

My other major concern is that I’ve been told that estrogen is stored in fat and since I’m sporting my own personal flotation device around my mid section these days–I need to find something to help me deflate it. I have to lose the weight–I worry every day that the hormone that is feeding my cancer is setting up shop and getting comfy in my fat. Ok–who am I kidding–I also want to lose the weight before my next class reunion next summer–I was so worried what everyone was going to think about my hair–now I just want to walk in and have everyone think, “wow, she looks great for having cancer”. I know. I know. Completely immature and shallow, but who wants to come back after 25 years looking like crap? Yes, I know all the stuff about the inner beauty, outer beauty, lasting beauty stuff, but when it comes right down to it, I really just hope that all my beauties are playing on a level field by then (and I really hope I drop 30 pounds!) . I’ve run into a few friends from high school, they all happen to be nurses. They have all said I look good–my color is good and since they work with sick people all the time, they can tell when a person is sick. I guess I’ve got that going for me. Problem with that is–I’d rather have hair and a boob–omg–I just did it–I said something very generically–I take that back–let me be specific…

I’d rather have a headful of healthy, blonde, soft, stylishly coiffed hair that I could seductively whip around should I be in the mood for some lovin’, be able to pull it back when I’m feeling playful, and be able to run my fingers through it to tousle it and have that wind blown look that most women dream of. And–I’d rather have two boobs–the same size–preferably a little lifted and energized looking with a natural looking nipple tattooed on the new one. I used to wonder about having bigger boobs and although I wouldn’t mind them a tad larger, I’d now just be happy to look like I did. So a perky 34B would be great. Afterall, it’s not the size–it’s how you package them! I think that’s it–have I forgotten anything? Please feel free to let me know if that wish needs a little more something something. I will be checking out the silicone stockroom tomorrow. Wish me luck!

OMG–I Forgot…

I forgot to add my #8 reason for the tattoo! I’ve gone back into the last post, “A Work In Progress” to add that. Scroll down through it (or read it again!) to get to that point. I’ve updated the entire page, I’ve already had a bit of traffic–so those that have already read it will at least see this and go back to see that. That particular point gives a person food for thought, that’s for sure.

A Work In Progress

“Get your shoes on–you need to come with me” I stated matter of factly as I walked in the house. My husband, who was playing the new Tiger Woods WII golf game I gave him for Father’s Day looked up and wondered what was going on. I moved directly toward the cupboard above the kitchen sink where I kept all my meds and as I opened the door, I knew exactly what I was going to need–Vicadin and Ibuprofen–And a lot of it. I figured with what I was about to do, I needed to get a jumpstart on curbing the pain factor.

I have never been a big “taker” of things. I am a lightweight. I admit it. I never liked that feeling of the room spinning, dry heaving from drinking too much, or the next day’s hangover. I hated not being in control–(there we go again). However, after my mastectomy, I found that my pain tolerance was off the charts. I was also in extreme emotional distress and I was very glad for those pills which helped keep me out of it for two weeks straight. I had a few Vicadin pills left over from my mastectomy and decided I was going to take advantage of them on this evening. I popped two of them and 4 Ibuprofen, grabbed my debit card, my camera, my hubby and away we went.

I wasn’t nervous at all as we drove. Jeff asked, “what’s going on?”.

I simply stated, “I’m going to get a tattoo”. He couldn’t believe it. Me. The pain wimp.

“You’re joking, right?” he said.

“Nope”, I replied.

“Where are you putting it?” he came back with.

“On the nape of my neck”, I said.

“Geez, that’s gonna hurt like Hell. I’ve heard that’s a really painful place to put it”, Jeff said.

“I’m not worried about it.” I smiled.

“You’re never gonna go through with it”, he looked at me smirking.

“Watch me”, I retorted.

We drove into the parking lot of the Scorpion’s Den, a local tattoo parlor. Ironically, the building that houses the business actually used to be my husband’s late grandmother’s house. He can remember playing in the house when he was a little boy. He was amazed at the changes and began to talk to the owner about which room used to be used for what. The owner asked him to bring in a picture of the house or the rooms and he was very interested in framing them and hanging them in his business.

While the men were talking, I went over to the scariest looking guy there that night. I struck up a conversation with him and showed him on the computer the image I wanted. As he sized up the image and traced it out on the transfer paper, I took a few minutes to look through some of the artwork. I couldn’t believe I was about to do this. I had always been against tattoos–personally. I am all for freedom of expression and didn’t care what anyone else did, but for me–it wasn’t a statement I wanted to make. I had never felt like “owning” anything like that before, but what that girl said to me in the wig boutique changed my mind. I was also beginning to think that maybe, just maybe, I had grown up a little too much. Its hard for me to explain because anyone that knows me–knows I live in a kid’s wonderland–literally. I play with kids, teach kids, hang with kids, laugh with kids, chase kids, swing with kids, paint with kids, etc. How could I be ‘too’ grown up?

Since I am entrusted with kids each day, I maintain a very high quality childcare in my home–one of the top in Scott County, IA. Since my business is kids, I’m not just asked to play with the kids, I am also obligated to teach them and to guide them in making good choices. I have to be an example to them–a good role model. So, in almost 14 years of providing care and having a ball doing it–had I essentially grown up and forgotten what it was like to really just have fun and let loose–lose control–personally–on a leisurely level? Maybe if I did drink a small glass of wine each evening I wouldn’t be wound so tight. Maybe if I made it a point to spend time laughing with girlfriends instead of pouring myself into my classes I would remember how it feels to loosen up. Maybe if I just went and got a tattoo, I could say to myself that I hadn’t forgotten the rebel inside of me.

There were a few other justifications, as well, for getting the tattoo.

1. It was a symbolic outward representation of the disease I was fighting.

2. It was a daily reminder that I needed to live life fully because we never know what is going to be thrown in our path.

3. It was my acceptance into the club–the one I had been fighting against for months. My VIP stamp of sorts that bound me to other women that had gone before me and would come after me.

4. It was going to be in a place that would be out of sight when my hair grew back so it wouldn’t be a nuisance should I ever be interviewed for something that might affect future endeavors.

5. The place I was going to put it–ahhh–the nape of the neck–during chemo–while I was bald or my hair was very short–it would serve as a sort of spiteful gesture to those that would look at me and question or whisper behind my back why I looked the way I did. Yes, this one is completely childish, but it also gives me the biggest laugh. It was a fact–I was going to lose my hair–something I was fiendishly upset about. The kicker–I would lose it right at the start of this summer’s pool season. I had counted up the days on the calendar. I had circled the day the pool opened. It was always circled each year–my family lives for that day. The thought that I was going to be a uniboob mom this summer was excruciating enough but to think I would also be bald was enough to leave me sobbing for days on end. I pictured in my mind people at the pool looking at me from the front and averting their eyes, or staring disgustingly at me. I pictured them pointing and whispering to their friends to look at me.

I also pictured turning around so they could see a large pink ribbon tattooed to the back of my neck and without having to turn around to see their expressions, I could see their faces melt into sorrow and then they would feel bad for pointing and staring or laughing at me. They would get it. Instant guilt trip. I win. My childish mind had come up with the perfect solution to combat what was about to be my toughest summer on record and I loved the idea!

6. I knew that things were aligned perfectly for me to get the tattoo on that day. In two days, I would be sitting in my new dentist’s chair as he put me under for my root canal and to also fix the 5 cavities. I knew I would go home from that with a lot of antibiotics and so if the tattoo should become infected over the course of 48 hours, I would have enough penicillin to help put that back into submission. I also knew the antibiotics would help everything heal faster and so–if ever there was a time to get a tattoo–today was the day.

7. Most importantly, my chemo was going to start that upcoming Thursday. In 5 days I would be sitting in a chair while poison was being infused throughout my body. I knew my oncologist would not allow me to have a tattoo after I started treatment. My white cells would be shot from the drugs and if I developed an infection from the tattoo, then I would be in big trouble. So, it was now or never.

8. Last, but not least, I had been told that if I would ever consider a reconstruction, the new boob would have the areola tattooed on. That’s how they do it. Wow. I never knew that. I decided I certainly didn’t want my first tattoo to be that of a nipple!

When it was time to go back to my room with Jesse, I gave my hubby the camera and told him to take a ton of pictures. I wanted to remember this rite of passage. I never wanted to forget this moment in my life. I felt like it was a very visual way of me “owning it” and that it was also a way of me being able to move forward. Jesse’s appearance complete with tattoes and body piercings didn’t scare me. I was a bartender for 15 years and I was able to comfortably joke around with him. I think that surprised him from the woman he probably mistook for being conservative and sheltered.

We talked about the ribbon itself. I told him I didn’t want it to look perfect. I didn’t want it to have clean lines or neatly trimmed edges. I wanted it to look “Torn and Tattered”, “Worn and Weary”, and I also wanted it to look like a “Work in Progress”–because that’s exactly how I felt. I told him, “I’m a Work in Progress” also and I hoped someday in the future, when I truly feel in my heart that I have beaten this cancer that I would come back and write the word “Survivor” underneath the ribbon. Jesse looked at me and said, “Awesome”.

He shaved the back of my neck, placed the transfer on it, and gave me a mirror to check it out. I was so excited. He showed me where to sit and he went to work. With my head bent forward over a cushion I joked with him about life while Jeff captured it all on film. I listened to the buzzing of his tool and could feel the oddest sensations–some of which were slightly painful, but tolerable. I could visualize how he was outlining the ribbon and where he was filling it in. I could feel him going over certain areas repeatedly for extra shading. I could feel him trail off the ends of my ribbon to make them look frayed. It was so meditative for me and I won’t lie–I was so glad I took those Vicadin beforehand!

I knew we were getting to the end and I was glad because I was beginning to grit my teeth each time he rounded over the top of the ribbon. I was also making a low, gutteral sound each time the vibrating needle came close to the base of my skull. You know what it feels like if you put a massager on the top of your head? That’s what it felt like in a weird way only with pain involved. The vibrations from his needle would come up the back of my skull and travel all the way across the top. I couldn’t help but think what it must feel like for some people who get their whole skull tattooed–wait–I don’t want to know about that–I was ready to be done. And just like that–we were. I stood up and looked at it in the mirror. I couldn’t believe it. Jeff came and told me, “Good Job” and gave me a quick kiss. I was in awe. I loved it. I absolutely loved it. It was a part of me now. There was no escaping it. I was branded for life.

A Work In Progress

There are new pics over in Flickr Photos. I spent way too long trying to get them in chronological order–it just wouldn’t work. They are going from last to first?? Click on more pictures and you’ll see the album sitting to the right–that is in order. I am letting go of it so I can move forward. Enjoy.

“Just Own It”

May 2, 2009

I had been told that within two weeks of my first chemo treatment my hair was going to start falling out. The thought of it was enough to keep me awake at night. I couldn’t help but wonder what in the world I was going to look like without hair, what kinds of looks I’d draw from others, and whether I’d have the guts to walk around bald–in public. My impending anxiety over losing my hair was mounting and I could no longer stop myself from thinking about it all the time. I had decided earlier in April that I’d be proactive and begin looking into wigs. On this particular Saturday, I walked into a local wig boutique apprehensively. I had been there a couple other times and the women remembered me and were happy to see me. I was prepared to really do some shopping that day. I had been geared up for it all day. After working at the Arsenal and giving several piano lessons, I went to the wig shop with the intent of sitting down in the beauty chair to try on several wigs.

When I walked in the shop, the owner and her daughter were there helping customers. The owner was helping a senior woman style her wig and sitting near to her was this very tall, thin, stunningly confident young woman. She had the MOST adorable haircut–short and kind of stacked in back so it had a poof and the front had a long sweeping bang like I like to wear. It was a beautiful color of deep red with some very light blonde highlights running through it. I loved it. I made a mental note that after my hair started growing back, I would go and have my hair cut and styled that way. I thought she was the daughter of the older woman getting her hair picked and I assumed that she and her mother had been out shopping that day in the Village of East Davenport and stopped in to the shop to get her hair fluffed.

As I was standing there I began to get really nervous again. This feeling kept coming over me each time I went into this salon. A friend of mine stopped in with her daughter, shortly after I had arrived. I had briefly mentioned that the little girl should come wig shopping with me that day and we would have all sorts of fun trying on crazy wigs and we would laugh. When they got there, I knew my little friend was thrilled to come play dress up with me. However, what she didn’t know was that I was beginning to get very sick to my stomach. I faked it and told myself to smile and be happy and have fun. The time drug on, though, and we were still waiting to be helped. After quite some time, the older woman got up and thanked everyone and left–alone. I noticed also that the beautiful girl was still there.

Before I could process what was happening, the young woman stood up and peeled off her trendy hair. My eyes flew open and I had to force my mouth to stay shut. I had to pretend that it was no big deal. I was transfixed on the site of this bald woman striding around the shop picking up wigs left and right all the while chatting and laughing amicably with the ladies. It was then that I began to have a very personal inner reaction. I thought I was going to throw up. My mouth started to produce that nasty saliva right before you throw up. My knees were shaking and I needed to sit down. I knew that was going to be me and as much as I should embrace this new look and wear it with pride–I just didn’t have that much confidence at all. In fact, I just didn’t want to be sitting here afterall. I didn’t want to lose my hair. I didn’t want to look like that. Yet, she was so beautiful and I couldn’t help but catch the gaze of my friend and her daughter to see what their reaction was. I think we were all a little floored at that moment.

As the woman took a seat in the beauty chair, I couldn’t contain myself any longer and I asked her kind of feebly, “Do you have cancer?” She proceeded to tell me and my friends that she had alopecia–a condition that causes you to lose all your hair–everywhere. She had the smoothest head, arms, and face. She didn’t even have eyebrows and yet she was just stunning. Her makeup was beautifully applied and her personality just exuded confidence. She told me she had begun to lose her hair one year ago and she was in her 20’s. She also said it would never grow back.

Ok–that was my lesson. Here I was whining and moaning about losing my hair for a short period in my life and here was this woman who had lost hers in the prime of her youth and she would never get it back. The emotional obstacles this woman must have faced a year ago had to have been huge. If she could get through that then I could get through this. But, she had already had a year to process and deal with her loss. Mine hadn’t happened yet and I wasn’t sure what feelings I was going to be going through until it happened. I could only imagine and it was that fear of the unknown that was making me sick. Everyone’s experiences are in one way or another relatable and yet different and relative to just that person going through it. Looking at this opportunity for what it was–a sign, an opportunity for growth, a chance to see with my own eyes what I couldn’t with my mind–I prayed inwardly that my friend and her daughter would leave and let me stay to talk to this woman.

I was deeply appreciative that my friends decided to go about their evening since it was getting late and I hadn’t been waited on yet. I knew that my little friend was disappointed, but I honestly think Marcia knew I needed to sit and just watch. It was no longer about me needing to play dress up. I was needing to learn how to cope and I would learn how by talking to this woman. It had become very clear that there was a reason I was sitting with this woman on this particular day and at this particular time. I couldn’t believe that I SAW the sign. I was in the middle of the sign. I wasn’t seeing it in hindsight and I hadn’t seen it coming, but I was smack dab in the middle of it and I knew this woman was about to teach me something profound. I could actually feel it and that was so overwhelming to me I began to cry. It didn’t start out slowly–it came on quite suddenly and huge tears filled my eyes. They were streaming down my face. I even made several out loud, inward, huffy breaths in rapid succession.

I don’t remember her name, but I will never forget this woman who was placed into my life at just that moment. She helped me put into perspective my own pain in relation to hers or anyone elses. She helped me to see that I too could get through it. She told me I had reservoirs of strength I didn’t even know about and that I would be amazed at my own stamina. Through my tears, I told her, “I hope and pray that I will be able to walk into a room and look just like her–self-confident, full of life, and happy”. I told her I thought she was “absolutely stunning and that she exuded confidence”. I told her I never would have thought in a million years that she was bald. We laughed and she began to tell me all about her wigs. She told me she buys wigs in every length, color, and style just like you or I might by shoes or purses or any other accessory. I really had never thought of it in terms like that. I originally saw a wig as a means to an end. I really hadn’t embraced the idea of having it be FUN. She definitely gave me food for thought and I knew I would do a lot of internet surfing when I got home that night.

As she got up to leave after making yet another addition to her collection of hair pieces, she turned and came to give me a hug. She looked deeply into my eyes as she said goodbye and she whispered the words that have kept me in the game thus far–”JUST OWN IT”. Three little unassuming words that on their own at any other given time in my life would have meant something or possibly nothing else. On this day, however, they took on a new meaning. She then let go and turned to flash a brilliant smile at the hairdressers and with a wave of her perfectly manicured hand she exited into the bright sunshine.

I stood there in the middle of the shop with those words resounding through my head. I felt woozy and yet somewhat empowered. I was overcome with the feeling that I needed to do something to show to the world and to myself that I was going to “own it”–own my diagnosis, my prognosis, everything in between and beyond which included my LIFE–the good, bad, and the ugly. I left the boutique that afternoon determined to do just that. For me, there was only one way to do that and that was visually. Armed with a plan, I went home to get my husband. I would need moral support and a camera for this one.